Surgery Numbah 5: Getting Closer to My End Goal

The next surgery has been scheduled, and it is hard to explain how I feel; the surgery will be done within under a month, and the surgeon will be focusing on my right foot. The game plan for this surgery, is the same as the left foot, and I am still facing the same chances of amputation. Even though the left foot surgery was successful, the surgeon has made it clear he is unsure if he can make that happen again. The game plan will be to sever the tendons of every toe, remove bone from each toe, and perform a fusion on my left joint where the big toe is. The plastic surgeon will be in the operating room as well, as the surgeons' are keeping a low threshold for amputation. The surgeon has explained if there are issues with the skin, blood flow, and more, he will amputate half of my foot right then and there. Currently I have 3 toes that have been breaking down, to the point skin is missing. I am keeping my spirits up that I will have my toes back, but I am being realistic that there is a good chance I could lose half of my foot.

 The range of motion in my left ankle looks great, and we are all estatic with the progress that has been made. I attend outpatient physical therapy two times a week, and continue at home physical therapy 2-3 times a day. Daily I set myself goals, and I push myself to accomplish them, even on the days I want to curl up in a ball and cry. I am making sure to listen to my body, and allowing myself to rest when my body demands it. Rehabilitating my leg is my full time job, and it is rewarding as well as exhausting. I have found ways to implement physical therapy exercises wherever I am, including walking the entire grocery store several times. I have learned simple errands we take for granted, have become rewarding in my eyes.

I was fitted for a specialized brace, known as an AFO. An AFO is a customized brace that supports limbs that may be weak, or assist limbs that are positioned in abnormal positions due to muscle contractions; currently my ankle is still struggling with muscle contractions, and has a permanent foot drop. I'm at a big risk of my left ankle becoming stuck in a permanent contracture again. If this occurs, amputation will be necessary as I do not have any other options to reverse the damage. When my foot isn't in the AFO splint, my foot flops down and locks up in muscle contractions. To prevent my ankle going back into a fixed contracture, it has been recommended to wear the AFO at all times, with exceptions for showering and physical therapy. What has been difficult is my leg is continuing to fight the brace. My heel is unable to sit properly in the AFO brace, and it continues to slide up and out of the brace. Envision pushing down on the gas pedal in a car, but instead of releasing off the pedal, it is stuck pushing down; that is what my ankle does daily. There have been multiple times my leg has gotten out of the brace, and there has been an incident where my foot was forcing itself out of the brace. During that occurrence, I was unable to put a finger in-between the strap of the brace and my foot/ankle. The surgeon and my physical therapist were notified, and they were confident this was from the dystonia. I met with the brace clinic, and learned that I am running out of options for how to keep my ankle immobilized. I will meet with the brace clinic again next week,  and further adjustments will be made to the brace. My surgeon has referred me to a colleague who specializes in neuromuscular diseases, and this provider was consulted originally for my first left foot surgery; the fun fact about this physician is he was the one to suggest the surgical method to save my foot originally. Botox is being considered again for my right leg, and further discussion will arise about what options I have left for my left leg.

I am overwhelmed with emotions, but there is a relief that I am in the home stretch. It is draining to go through the grieving emotions, but it doesn't feel as intense as a year ago at this time. I am practicing self love and self care, and have been reaching out to family and friends for support. I continuously keep myself busy, between doing work for the RSD association, and creating art. When I start feeling down about the situation, I look at my left foot, and wiggle my toes; I smile every time I see them, as I am lucky to still have them. Making the decision to undergo this extensive surgery again hasn’t been easy. Signing paperwork allowing my surgeon to make the decision to amputate is difficult, but I know he will make the best judgement. When it comes to RSD/CRPS, any surgical intervention that is necessary has to be thought out in depth. The more trauma my body encounters, the chances of the RSD/CRPS spreading increases. Every person who has RSD/CRPS responds differently to medical and holistic approaches, and its crucial to figure out what works for you before undergoing any procedure. For me, I respond well with Ketamine, and medical marijuana; my treatment team is insisting both of these approaches are incorporated in the recovery process, and I was hoping they would prescribed frozen yogurt, and chocolate as well (a girl can dream, right?).  In my eyes, there are to many pros that outweigh the cons, and it is completely worth undergoing this procedure; I am not giving up my goal of being able to walk.

7 day hospitalization, and I have never been so happy to be home

As I am finally laying down on my bed, I can take a deep breath, and snuggle into my own bed. This was a terrifying 7 days, and and some of the admission I don't have recollection due to the amount of narcotics benzodinpines, and muscle relaxers to try and control the pain. What is difficult with CRPS, it tends to not respond to every medication or treatment method, and you have to try every option in hopes for relief.  Often patients are told ‘this is all in your head’, and it can take an emotional toll on you. Growing up I was often told the phrase ‘suck it up and live’, so I often ignored the pain and continued to do the things I loved. CRPS acts like a monster, and only responds to when things are his way. But that is how I think of the disease. It has a mind of it's own, and you have to find the right cocktail to make the CRPS have a nice buzz going to make him happy. What s tricky, is every person responds differently. CRPS is categorized as a neuromuscular disease. My case of CRPS may look different than some of my closest friends as we have similar symptoms, but are affected differently with comorbidity conditions. Think of a snowflake; there isn't an identical one. The same theory applies to CRPS. I will never know what it feels like to be in their shoes, and vice versa. But what is amazing about what you meet someone with a chronic illness, there can is an automatic connection. You may not be friends with them, but you will feel respect for them because you understand that they are fighting a difficult battle.

On Tuesday November  28th, I went for allergy testing, as I was having anphlactic reactions to cherries. I still laugh at the idea of being allergic of being not being able to eat it because it is so random. But for me, it severe, to the point I stop talking. The way you are tested is by a skin test, and I was reassured that there was little risk of going into anaphylactic reaction. Oh haiiii I was that girl that had to be the in the little risk category. The test revealed so many allergies, that my body went into heigh wire not only with an allergy attack which shocks your body. With CRPS its shocks your body to the extreme. Your body is extremely sensitive, especially to trauma. The trauma could be minor, but it could piss off the CRPS monster. It is not uncommon for one to go into a flare, after having multiple traumatic events occur.

I have learned how to identify which symptoms are related to CRPS, and the same with Dystonia, but this was a completely different kind of pain. The pain was going up my left flank, and down my groin and abdominal area. I had been having cramps for a couple of weeks, but I didn't think much of it. By Thursday evening I was hunched over vomiting and having the chills from the pain. I was struggling to urinate, and could feel so much pressure, along with shooting pain that would come and go. I was hunched over, and any time I moved I was in tears. My dad and I went to an urgent care, and they sent us immediately to the local hospital as the physician felt I had a kidney stone.

When I got to the closest ER, we tried to rule out a uti, but I wasn't able to give a sample. A cat scan was done as there was questioning about a kidney stone. The results came back negative, and I was discharged. I emailed my pcp, and got in to see her the next day. After I caught her up with my symptoms, she was concerned about my kidneys, bladder, and spine. She wanted me to be seen in the ER that was affiliated with the partners systems, and she didn't want to wait. She sent me to Faulkner.

When I was at Faulkner, I was greeted by a triage nurse who's voice was familiar. When I saw her face, I realized it was someone I grew up with in first grade, and we danced together. It was a little embarrassing to tell someone you know and haven't seen in years about your medical stuff, but it almost felt comforting when you're trying to remain calm. I'm thankful she was there, and she is truly an amazing human.

It will take time for the effects of the medications to get out of my system, and it has caused some unpleasant side effects that affected my internal organs. I was loosing sensations in areas of my body that was frightening, and this left the doctors nervous that neurosurgery may have to get involved. The doctors knew I was going to be admitted, but there was debate if I should be treated at Brigham and Woman's as I have specialists there. I remember crying as I was frustrated, and just wanted to go home. I remember my friend who was my triage nurse pop into my room right as she was about to head home off her shift. I caught her up with everything as tears are rolling down my eyes. She gave me the biggest hug, and reassured me that she was here if I needed anything.

It was recommended I be transferred to Brigham and Woman's. After being in the ER and having another cat scan performed, and was brought to a room three hours later. When meeting with the specialists, they were confident my SCS cords had migrated, and it was stimulating my abdomen and bladder. The down fall was they do not do work with the manufactuer that makes my specific stimulator. If this is what was occurring, then I was facing neurosurgery to correct the misplaced leads in my spinal cord.  I don't remember much of this stay as I was heavily sedated with every form of oral and IV pain medication. I was unable to void, and would need to be straight cath'd every 6 hours

My pain doctor was contacted and a plan was made to be discharged Monday morning, and I would see him in clinic. As my dad and I listened to the nurse explain the discharge instructions, we were speechless. "If she is continuing to retain urine in 24 hours, go to the emergency room; Just not this hospital. When I was discharged I was retaining to the point of having severe abdominal and back pain. The only comfortable way to lay was in the fetal position. If this is what it feels like to have kids, I am not doing it!

When I was discharged, my dad drove me to my pain doctors office, my pain doctor was confused with what was going on, and why I was hunched over crying. We had explained what had happened at the previous admission/discharge and his response was priceless: "wait they discharged you and you can't pee. How the hell am I going to fix that?" He told us that he received a phone call that I needed an urgent appointment, but there was no communication about the situation. When I usually see him in a good mood and we talk about life, and this is the first time I saw him fuming and flustered about the situation. I've been seeing him since I was 19, and I call him Kramer as he looks like a mix of Kramer from Seinfeld and Al Pacino. Kramer explained that there was no way my leads could have migrated as they have been implanted for 7 years, and the scar tissue healed it to be in the proper places. He felt the hospital discharged me because it wasn't their programing they use, and there was nothing else they could to do to help. This was the best thing that could have been done. I described my symptoms of the severe amount of pain I had in my back,He was concerned that one of the discs was pressing or causing issues with my bladder. He admitted that my back issues were brushed under the rug and something was actually going on. When Kramer looked at my CT scans and reviews, he revealed that I had degenerative disc disease, and two herniated discs at my L4 and L5.  911 was called, and I was shipped off to Beth Israel as we were fearing my spine was compressing my bladder.

When I got to the ER, more tests were performed, and I was admitted. Neurosurgery was consulted and they said my spine wasn't pressing on anything. I had every medication in my system, but the two important medications were never provided for a week; these medications are for my anxiety, as well as my ADHD. When I am not on this meds, it is extremely noticeable; not only do I see a difference, but others can as well. These are two meds that should never be stopped cold turkey, and going through a traumatic event is probably the worst time these medications were stopped. I was a hot mess. I remember being in the bathroom trying to urinate, and if I couldn't I would need to have a foley to help. I called my therapist and bawled my eyes out of how scared I was. My mind was racing endlessly. There was so much unknown, and I was scared shitless. The neurologist that was assigned to my case suggested I should see the same neuropsychiatrst that first diagnosed me with a conversion disorder. This is a sensitive subject, and I have trust issues with doctors after what happened in the past. I have had so many doctors who have not believed my pain is real, and that has left me feeling guarded when I work with providers. Having flashbacks and severe anxiety without your medication is horrible. My head was spinning in every direction, and I felt depleted physically and mentally.

I met with the pain team on Wednesday, and it was agreed to stop any opioid pain medication and muscle relaxer that was being pumped into me. The doctor asked me what I use for pain control at home, and my response was medical marijuana and ketamine. We were talking about how beneficial these forms of treatment can be, and I told him about how much ketamine infusions helped me during college. The hospital did a way with infusions years ago, and it had to be rare circumstances to have it done on an inpatient level. The goal of the infusion was to reset my nervous system, and get it to a manageable level, so I could go home. After the physician spoke with another colleague who works closely with Kramer, it was recommended a 12 hour low dose ketamine infusion be administered. It was a difficult night as I was bombarded with visual and auditory hallucinations, as well as paranoia. The nurses taking care of me were fantastic, and were so kind and compassionate reassuring me I was  okay. The nurses acted very quickly when the side effects were increasing, and the doctor responded as quick as he could. Within minutes I remember a nurse holding my arm reassuring me I was okay as she pushed a sedative to calm me down. I remember crying to her and saying thank you.

When I woke up in the morning, my infusion had a few hours left, and I felt so much better. I was in a complete haze, and the pain was tolerable. The pain doctor came in, and he sat down next to me and we were shooting the shit cracking jokes about the side effects I experienced, and was curious about the hallucinations I had and what was it that triggered them. He explained he expected me to be affected by the side effects, and he talked about how he made a very short clear message warning my nurses that this most likely would happen. I thanked him for making this infusion possible and we suggested that my upcoming surgeries Ketamine continues to be involved for pain management along with non-opoids medications, as I am hyper sensitive to opioids causing internal organs to not work properly or at all. These doctors were truly wonderful, and they both went over and beyond to make sure we could figure out a plan. You could tell from his mannerisms that he cares for his patients and wants to make a difference. After talking for a bit, he had a shit grin on his face wanting to know the details of what I could remember from the hallucinations. He had me hysterically laughing at what I could remember, and it is true when they laughter is the best medicine.

Before I was discharged, one of the pain doctor's asked if I was in counseling, and I was open and told her and her colleague I go weekly. It was recommended I increase my counseling sessions to a couple of times a week, as it may be beneficial to receive some extra support. As each day has passed since I was discharged, I am remembering more of what occurred, as the medication is slowly getting out of my system. It has been quite the rollercoaster, and I'm worn down physically, mentally, and emotionally. Since being discharged, I have been forcing myself to keep busy and moving continuously as I know the minute I stop to rest, the emotions take over, which is usually at night. It has been difficult to accept what I can't control, and learn to adapt, particularly obtaining to my health. I have been doubted for so long that my pain isn’t real, and I at times doubt myself that I’m over exaggerating about the intensity of  the pain. I always wonder how can I suck it up a little more, and I’m realizing I can’t act tough anymore. I will always be strong, but I need to be open with myself and others about my fears with RSD and Dystonia.

I am starting to reach out to others about what has happened, as I know this is the time I need some extra support. My dad, brother, and sister in law were unbelievable during this time, checking on me daily keeping my spirits up, and being by my side through it all. I’m grateful for every person who checked in, even if I couldn’t respond back. Just knowing the amount of support I have, makes me realize I’m not alone in this journey. All the nurses I had were wonderful, and I have so much respect for anyone who is in the health care profession. I'm thankful that the pain team at Beth Israel for all they did, and advocated for what I needed.

It is possible to succeed when you get knocked down

It’s exciting to finally be at the point I can begin to rehabilitate my leg. Last week I met with the surgeon, and was given the clearance to walk with crutches. It was determined I will need an AFO brace to provide stability to walk. This is a specialized brace that provides support to control the position and motion of the ankle. This brace compensates for weak limbs, as well as position a limb with contracted muscles into a more of a normal position.  I had the AFO molded to my foot, and it reminded me of the process done when a plaster cast is put on someone’s limb. It will take 2-3 weeks for the AFO to be made, and then I will be able to take it home and officially wear a shoe. It has been 2 years since I have worn any form of a real shoes, as my feet was too contracted to fit into anything. 

For a good period of time, I didn’t think I was ever going to walk again. I felt like I was watching life with very dark sunglasses caked with dirt, in a pitch black room; the only light was distant, but not possible to recognize. Nothing seemed clear, and I had to use my other senses to trust thing would get better as I couldn’t see. As things began to look up, my sunglasses began to clear around the edges. I would take one step forward, and 4 steps backwards; my sunglasses became caked in dirt once again. It’s hard to stay upbeat and positive when so much is out of my control. At one point I felt like everything was my fault. As I am getting my ‘walking privileges’ back, the dirt is scraping off in chunks. Physical therapy  begins next week, and layers will continue to crumble away. 

As the casting for my AFO was being done, it began to dawn on me that this brace is the next piece of equipment that will be life changing for me. To think this time last year, customized  shoes were made for my contracted feet, and would eventually be adjusted so adapt half an amputated foot. I remember driving home from the appointment with one of my PCA’s and having tears roll down my face. I felt sad and alone knowing that I looked different. I already felt like I stuck out like a sore thumb for using adaptive equipment to help ambulate, and these shoes were a dead give away that I looked different. These shoes looked like they were meant for Mickey Mouse’s feet. I wore those shoes once, and I will always keep them to remember how far I have come. 

I have uneasy feelings knowing I will always need a brace on my leg, but then I remember this could have been so much worse. I was told I would wake up with half a foot, and if I didn’t have surgery to correct the excessive damage, I would never walk again. At one point in the beginning of my dystonia journey, we were unsure if I would regain the ability to walk again, leaving me wheelchair bound. I refused to give up because I knew things would get better. I always had hope I would get back to where I left off two years ago, but I’m glad life steered me in a different direction. I never wish what I went through on anyone, but I learned many valuable lessons about myself through out this period:

1. Resources are available for individuals who are disabled. It takes a lot of patience, but there are options. The disability community has to stick together, as they can be more knowledgeable than many providers. 
2. SSI/SSDI is a corrupted and broken system. If you have a disability, you have to fight all you can to receive assistance as there are many individuals who abuse the system. 
3. Self care is critical. If you don’t take care of yourself, you will never heal and be happy with who you are as a person. 
4. It is okay to cry and be angry. Never bottle up how you truly feel, as you are doing more harm than good. 
5. I refuse to give up, even when the hardest obstacles have been chucked at me. 
6. Never give up fighting for medical care, even when health insurance is putting up a fight. Health insurance can be a b***ch.
7. It is okay to accept help from others. 
8. 3/4 of a masters degree in social work taught me how to be a case manager balancing all my medical shenanigans. 
9. If you don’t take care of your mental health, it will lead to further issues.
10. When life gives you a bag of ultra sour lemons, be patient as sweet lemonade can be made. 
11. If you can’t laugh about difficult situations, then the healing process will be delayed. 
12. The only option that matters is your own...and maybe the dog’s 🤷🏻‍♀️
13. Asking for help doesn’t mean you’re weak. 
14. Be honest with yourself.

When life knocks you down, there is always a way to pick yourself back up. Reach for a hand, and ask for help; there is always someone there to cheer you on. I am extremely grateful I have supports who have and continue to  help me get back on my feet (literally). Without leaning on others for help, I wouldn’t be where I am today. When you live with a chronic illness, you never know what the next day will bring. Instead of worrying about the future, appreciate the present moment. Look at what you are grateful for, and note the positive moments. Even if it was a no good really bad day (such a good book), there is always a positive moment hiding in your peripheral vision. When it is hard to see clearly, take a step back, and adjust those filthy sunglasses. When you clear away some of the dirt, positive moments are in the corners where the dirt rubbed off. 

Having a chronic illness will keep you on your toes

At the age of 20, I had a spinal cord stimulator implanted to help my RSD. A SCS is the idea of a tens unit; the difference between the two is a SCS in internal. The purpose of a SCS is to mask the pain signals before it hits the brain. Paddles and wires are implanted in my spinal cord, and a battery is placed in my lower back/hip region. What’s really cool is I have a remote that controls the stimulation, so it gives me the ability to adjust and change different sensations in different areas of my limb. The battery that is implanted has to be charged once every 2 weeks, as well as the remote. Even though the battery is rechargeable, it has to be replaced every 7-10 years. 

For the last year, I have been having issues with my stimulator battery. Lately the battery has to be charged every 2-3 days, and it does not hold a charge. The only way I can charge my battery is if I am sitting in bizzare positions. I had an appointment with my pain doctor, and 2 hours was spent trying to reprogram my SCS. After talking with my doctor and the Boston Scientific rep, it was agreed it would be in the best interest to change out my battery ASAP. 

I received a phone call on Wednesday from his office confirming  my surgery for November 15. My doctor wasn’t joking when he said he wanted this done ASAP! My SCS has helped me in so many ways, and this is a resource that I benefit from greatly. The procedure seemed simple when it was explained: open up my back, pop out the old battery, pop in a new one, sew me up and call it a day. It’s an outpatient procedure, so at least I can be comfortable at home.  It’s never easy to go through surgery, and Im not going to lie 4 surgeries in a 1 year span is intense.

 I realized that this upcoming surgery is actually a milestone; after this procedure, all the surgeries on my left leg will be done. Technically I am half way done with my surgical journey! It’s such a rewarding and satisfying feeling seeing how far I have come mentally and physically.When you can see the eye on the prize, it makes you fight harder so you can win.. Keeping an open mind can be quite challenging in the beginning, but it gets easier as time goes on. When you’re having a difficult day, think about the things you are grateful for. It could be as small as getting out of bed and taking a shower, or sitting outside getting fresh air. I could give a laundry list of everything I’m grateful for, but today I am extremely grateful I will be getting a new SCS battery. 

Friends Love You For You

“Friends are like your backbone. They are always there when you need support” (iliketoquote.com). Friends are there for a reason, and want to help when things become difficult. When you need to cry your eyes out, sometimes you need someone to listen. There may not be anything a friend can say that will make the pain diminish completely, but knowing someone is there can help tremendously. 

I am a type of person who will drop anything for my friends, but I do not take the time to care of my emotional well-being when things become difficult. I never want to complain to others about what is going on with me physically or emotionally. I grew up learning that others do not want to hear about the negatives in your life, so I tend to focus all of my energy with on the positives; I’m learning this may not be a healthy motive all the time.

While being on the phone with a friend, I noticed I had tears rolling down my eyes. The tears were not directly related to my physical pain, but the emotional pain I haven’t processed yet. As the tears flooded out, a sense of calmness arose I felt like a weight was lifted off my chest. I continuously thanked my friend for listening to my nonsense and she replied gently: “I love you and I want to know what’s going on in your life. You’re going through more than someone should, and you have to open up to others and tell them. You can always come to me”. 

I can’t be afraid to tell people how I truly feel, otherwise I will be alone handling life situations. Friends can be great support systems, and if they really care about you, they will be there for you during the good the bad and the ugly. Sometimes you need the reassurance that it’s okay to reach out and ask for help. If friends truly care about you, they will not judge you; they only want what is in the best interest for you.

24 Hours After Surgery

Yesterday I had my third surgery on my left leg, and I’m excited to say we are all confident this is the last surgery for this leg. Before I went into the OR, the surgeon explain when my muscle tore last week, it actually helped in regards to the surgical process. When it tore, it lengthened my achillies, but not enough to eliminate surgery in total. Before the surgery was performed, a nerve block was done, and it was agreed that a ketamine infusion be performed while I was under anesthesia. Ketamine can be beneficial for individuals who have RSD/CRPS as it can slow down/prevent spreading of the disease. 

When I woke up in the PACU, I was feeling pretty good and wanted to go home. I didn’t see the surgeon when I woke up, but he did speak with my dad about how surgery went. The surgery was successful, and the surgeon was able to lengthen my achillies without difficulty. He was not concerned about my achillies rupturing in the future, and did not feel it would have the be severed (THANK YOU LORD). He also explained there is a 50/50 chance I will need braces on this leg, which left me feeling really hopeful. 

At 8:00 last night, I recieved a voicemail from my surgeon checking in on me. He said how well I did in surgery, and woke up immediately after it was over. He talked about how happy he was, and is confident this is going to help. I was shocked I got that message from him, as I’ve never gotten a call from him checking in on me. I was smiling as I listened to this, and kept thinking I am blessed to have a surgeon that truly cares. 

Taking Care of Your Mental Health is Important

Everyone goes through some form of pain, and handles it in their own way. This pain can be physical, mental, or emotional. There is always help for anyone that may be struggling, but the first step one has to take is reaching out for help and accepting that you can’t solve your problems independently. It’s hard to admit when you’re struggling, and can be embarrassing to ask for help. There are many thoughts that can go through one’s mind about how others may view you for needing help. For a long time I was afraid of what people would think of me for asking for psychological help. After going back and fourth with myself for a while, I finally told myself to cut the shit on procrastinating and ask for help. I was tired of being afraid of what others thought, and I needed to put myself as a priority.

I entered counseling two years ago, as I needed help. I was struggling coping with all that was going on, and was spiraling into a deep depression. It was difficult to accept that my life was drastically changing, and I would have to learn how to adapt being permanently disabled. I was sad about everything, and had a laundry list of things I was grieving about: loss of independence, not being able to finish school, limited mobility, and loss of relationships. I hated how much was out of my control. Every doctors appointment that I would go to, I would leave there bawling my eyes out as doctors were stumped and couldn’t help. It was mentally draining hearing doctors continue to blame my symptoms to my psychiatric issues, even though I knew something more was wrong; I felt completely hopeless. I was tired of being labelled as a drug seeker, and I felt like no one was listening to me. I stopped being social, and struggled reaching out to close friends. In my head, I felt the people I loved wouldn’t want to spend time with someone who is constantly in pain with an unknown reason of why this was occurring. I felt like everyone was judging me, and thinking I was making this up to get attention. This was a time that I felt alone, and no one understood how much emotional pain I was feeling. 

I became defensive towards providers and would have my guard up ready to fight back. Doctors were dismissing my situation, and I was determined to prove them wrong. My gut was screaming something wasn’t right, and my heart sank when I learned that my gut was right. The day I learned I was facing amputation, is when I started giving up on myself. I was so angry it took so long to figure everything out, and all I could think of was the comment multiple providers repeated numerous of times: “you should have came to us sooner”. I truly felt defeated.

I was devestated and furious with myself. I started mentally beating myself up that I should have done more; I was convinced this was my fault. I became hyper focused on trying to figure out what caused my legs to develop dystonia, and continued to harp on what I should have done differently. I knew things were going to get better, but the feeling of failure would not go away. I became so sad knowing I needed amputation; I wanted to use my legs all I could. I began walking around the house without my crutches, forcing all of my weight on my contracted/paralyzed toes and frozen ankles. In my mind, I wanted to enjoy using my feet all I could before they were taken away from me. When looking back at this period of time, I recognize how unhealthy this behavior was. This was the only control I had, and I felt like I deserved to be in pain. 

I remember having lunch with a close family friend, who disclosed how concerned she was about me. She is a neuropsychologist, and is someone that I have always respected and viewed as a big sister figure. She urged me to get myself into counseling to do trauma work. She looked at me and said that it’s worth the emotional pain to take care of yourself. This was the best advice I have taken from someone. 

I increased my counseling sessions to twice a week, and was consistent going to them. I wanted to get my life back, and I was willing to do the work. I began utilizing cognitive behavioral therapy (CBT)  with my therapist, and did self help workbooks independently so I could incorporate CBT daily. Medication was adjusted in hopes to to help with my anxiety, depression, and ADHD on a chemical level. I encorporated mindfulness, and started using the creative arts as my form of meditation. Painting was always somethings I loved, but I lost the drive to continue. I forced myself to do some form of art weekly, whether it was painting, writing, or knitting. I focused on holistic approaches to help with my pain management, and would learn that is also helped my mental health. I got myself involved with the Reflex Sympathetic Dystrophy Association (RSDA) and started doing work with their peer mentor program and became a member of their grant committee. 

It has been 8 months since I started counseling twice a week, and it makes my heart happy to see that my hard work is paying off. I’ve noticed I am happier and calmer all around, and my anxiety/depression has been decreasing substantially. My anger has been diminishing, and I feel like myself again. My anxiety will creep up at times, but I’m able to intervene and use healthy coping skills to help with these feelings. Im not afraid to ask for help when I need to vent, or even sob my eyes out. Growing up I have always hated the word patience, and it is now one of my favorite words. When you put in the work, be patient and you will see positive results. 

The best gift I could have given myself was to take care of my whole self. There is still work I need to do, and I will continue to dedicate my energy on getting better. When life becomes difficult, hang on because it will get better. Reliving painful memories is never easy by any means, but it will strengthen you as a person. The strongest thing one can do for themselves is ask for help.